leaking question

Hollynn22
Hollynn22 Member Posts: 15
edited March 2014 in Prostate Cancer #1
My boyfriend was diagnosed with PC on 6/30/09, his PSA is 18. His cancer stage is T2C, gleason score 7. His CT scan and bone scan are negative. His prostatectomy surgery on 7/30/09 and he had to carry a catheter tub for 12 days. After his catheter removed, he now has problem with leaking really bad. Sometime he doesn't even notice it came out until he feels wet in his pants and he has to wear diaper 24/24 for now. My question is any gentlemen out there have the same problem? Will it improved? and for how long? couple weeks, months...or years? It is still early to worry about sexsual function right now but the leaking...Please help and give me your own experience.

Thanks a lot!!!!
Good luck to all of you!
God bless!

Hollynn22

Comments

  • lion1
    lion1 Member Posts: 241
    Holly nn22--Leaking
    Holly,

    I will try to reassure you. First it's way too early to be worried. Typically for many men within 6 months and of course everyone is different, the leaking stops and the erections are back or are coming back. Myself it took about 8 months and my erections began to get better and that was without Cialis. When I began taking Cialis it really helped. 3 yrs later my erections are just as good without Cialis as they were with Cialis.

    Now on the incontinence front, I am still battling and trying to find the right fix for me. The main thing is in about 5-6 months after all the healing is done, your boyfriend should see his Urologist and if he is still having problems there are several treatments to get him well again. Unfortunately, for me I have been through a lot, but haven't given up hope.


    Stay positive support your boyfriend and as he heals there is alot you'll be able to do for him to get him on the road to recovery. It's early and the future is bright.

    Lion1
  • Hollynn22
    Hollynn22 Member Posts: 15
    lion1 said:

    Holly nn22--Leaking
    Holly,

    I will try to reassure you. First it's way too early to be worried. Typically for many men within 6 months and of course everyone is different, the leaking stops and the erections are back or are coming back. Myself it took about 8 months and my erections began to get better and that was without Cialis. When I began taking Cialis it really helped. 3 yrs later my erections are just as good without Cialis as they were with Cialis.

    Now on the incontinence front, I am still battling and trying to find the right fix for me. The main thing is in about 5-6 months after all the healing is done, your boyfriend should see his Urologist and if he is still having problems there are several treatments to get him well again. Unfortunately, for me I have been through a lot, but haven't given up hope.


    Stay positive support your boyfriend and as he heals there is alot you'll be able to do for him to get him on the road to recovery. It's early and the future is bright.

    Lion1

    Thank you very much Lion1
    Thank you very much for your quick response. I'm sure 100% there to support my boyfriend. God bless you getting better everyday. If you have any good news on your recovery or any new experience please share with us, we're here to hear. We both thank you very much again.

    Hollynn22
  • lewvino
    lewvino Member Posts: 1,010
    Holly,
    Just had my surgery

    Holly,
    Just had my surgery on Aug. 12 and still wearing the cath. I also have to wear it for 12 days.
    I've had two nurses tell me that when they remove the cath I will leak a first but that it will get better. I've noticed two times towards the end of the day where I will get leakage around the tip of the penis from the Cath. Just have your boyfriend hang in there. Drink the water, and do the walks and kegel exercises. Talk to his doctor but I'm sure it will start improving in time.

    Larry
  • Hollynn22
    Hollynn22 Member Posts: 15
    lewvino said:

    Holly,
    Just had my surgery

    Holly,
    Just had my surgery on Aug. 12 and still wearing the cath. I also have to wear it for 12 days.
    I've had two nurses tell me that when they remove the cath I will leak a first but that it will get better. I've noticed two times towards the end of the day where I will get leakage around the tip of the penis from the Cath. Just have your boyfriend hang in there. Drink the water, and do the walks and kegel exercises. Talk to his doctor but I'm sure it will start improving in time.

    Larry

    Thank you lewvino
    My boyfriend didn't have leakage when he had the Cath in but after it removed. He will back to work in the end of August and just wonder if the leakage will stop by then. Look like he has no choice but wear diaper to work and he hates it!!! He does some walks everyday and looking forward to see his doctor in Aug. 28 about this problem. He also has an other appoitment in next 3 months for them to check his PSA level again. Hopefully it will be 0 this time :)

    Best wishes on your speedy recovery Lewvino.
    We both thank you for sharing your experience with us about the leak.

    Hollynn22
  • saoco
    saoco Member Posts: 43
    Hi,hollynn22,I am a new
    Hi,hollynn22,I am a new member of this family,and thank God I am reading the posting for the first time.about your boyfriend I promise it will go away, there is an exersice he needs to do
    everyday many times. the ED problem will also get better.
    1-you need to undertand that it will take several months for the ED to get back to 90% and with
    Viagra it will be 120%.
    2-the incontinece, when he goes to urinate,he need to stoped for ten seconds release and stoped, he need to do this every time he goes to the bathroom.
    3- in the mean time you guys need to be creater I hope you known what I mean.
    I have been cancer free for four years. my wife understood what we need to do,and I went
    trough all the problems you could imagined.I hope this may help you both God bless you.
    saoco
  • Toyoungforthis
    Toyoungforthis Member Posts: 10
    saoco said:

    Hi,hollynn22,I am a new
    Hi,hollynn22,I am a new member of this family,and thank God I am reading the posting for the first time.about your boyfriend I promise it will go away, there is an exersice he needs to do
    everyday many times. the ED problem will also get better.
    1-you need to undertand that it will take several months for the ED to get back to 90% and with
    Viagra it will be 120%.
    2-the incontinece, when he goes to urinate,he need to stoped for ten seconds release and stoped, he need to do this every time he goes to the bathroom.
    3- in the mean time you guys need to be creater I hope you known what I mean.
    I have been cancer free for four years. my wife understood what we need to do,and I went
    trough all the problems you could imagined.I hope this may help you both God bless you.
    saoco

    Question for Saoco
    Hello, I have a question about life after the catheter pull. I don't seem to have much control right now, been seven hours since I got it removed. Burning up pads left and right. Is this normal right after the catheter removal? Heck I am getting afraid to stand up or move around.
  • Hollynn22
    Hollynn22 Member Posts: 15
    saoco said:

    Hi,hollynn22,I am a new
    Hi,hollynn22,I am a new member of this family,and thank God I am reading the posting for the first time.about your boyfriend I promise it will go away, there is an exersice he needs to do
    everyday many times. the ED problem will also get better.
    1-you need to undertand that it will take several months for the ED to get back to 90% and with
    Viagra it will be 120%.
    2-the incontinece, when he goes to urinate,he need to stoped for ten seconds release and stoped, he need to do this every time he goes to the bathroom.
    3- in the mean time you guys need to be creater I hope you known what I mean.
    I have been cancer free for four years. my wife understood what we need to do,and I went
    trough all the problems you could imagined.I hope this may help you both God bless you.
    saoco

    Thank you Saoco
    We both thank you so much for your advises. We absolutely will try any exercises that will make my boyfriend improved.

    God bless you!
    Hollynn22 :)
  • shubbysr
    shubbysr Member Posts: 87
    Hollynn22 said:

    Thank you Saoco
    We both thank you so much for your advises. We absolutely will try any exercises that will make my boyfriend improved.

    God bless you!
    Hollynn22 :)

    Urinary Control will return!
    Hollynn22,

    Welcome to the club of PC survivors! Of course, your boyfriend. Urinary incontinence is a side effect for all of us post surgery. Remember that we have two valves to hold our urine. One of which is the prostate gland. Well, we removed the prostate gland. This leaves only one valve to hold back the urine. Over time, our bodies adjust and we regain control.
    So, yes it is common to have leakage and yes some of us have to wear "diapers" all day, especially when we return to work.
    It has been three months since my surgery and I see improvement in that I used to saturate 4-5 pads or diapers daily. Today I change 2-3 times every 24 hours!

    Good Luck and thanks for supporting your boyfriend and us!

    shubbysr (jim)
  • Hollynn22
    Hollynn22 Member Posts: 15
    shubbysr said:

    Urinary Control will return!
    Hollynn22,

    Welcome to the club of PC survivors! Of course, your boyfriend. Urinary incontinence is a side effect for all of us post surgery. Remember that we have two valves to hold our urine. One of which is the prostate gland. Well, we removed the prostate gland. This leaves only one valve to hold back the urine. Over time, our bodies adjust and we regain control.
    So, yes it is common to have leakage and yes some of us have to wear "diapers" all day, especially when we return to work.
    It has been three months since my surgery and I see improvement in that I used to saturate 4-5 pads or diapers daily. Today I change 2-3 times every 24 hours!

    Good Luck and thanks for supporting your boyfriend and us!

    shubbysr (jim)

    Jim, thank you for your clearly explanation
    Today I learn more about my boyfriend leakage and it makes sense to me why he has it. It's good to hear that the unrinary control will return in just a few months. My boyfriend is not alone. There are many nice gentlemen like you out there ready to give us help and advices. We appreciate a lot for your support and wish you best lucks on your recovery road.

    Hollynn22
  • JR1949
    JR1949 Member Posts: 230
    Hollynn22 said:

    Jim, thank you for your clearly explanation
    Today I learn more about my boyfriend leakage and it makes sense to me why he has it. It's good to hear that the unrinary control will return in just a few months. My boyfriend is not alone. There are many nice gentlemen like you out there ready to give us help and advices. We appreciate a lot for your support and wish you best lucks on your recovery road.

    Hollynn22

    Hang in there...urinary control will return
    Hollyn22, urinary control will return. I had radical prostatectomy March 2, 2009. My PSA was 22 presurgery, now 0.008!! I am still wearing diaper and using a pad. So far I have had good days and bad days. The good news is that I am past the flooding accidents for at least four months. I now am able to hold it till I can get to a bathroom ( the first 2 months there were times I had no sensation I had to urinate, would just wet my pad), I am using an average of three pads a day, for some reason I am awakened an average of 2-3 times nightly and I don't even dampen my pad. I was getting up an average 4 or more some nights just a month ago. There is hope and you just have to be patient. I know it is frustrating, but my wife like you, supported me and told me to keep trying...it will get better. Words of advice, do not drink any liquids that have caffeine (believe me, decaf coffee tastes the same to me now), stay away from spicy foods, stay hydrated but do not drink a lot close to bedtime.

    Hang it there, don't give up, better days are coming
    JR1949
  • JR1949
    JR1949 Member Posts: 230
    JR1949 said:

    Hang in there...urinary control will return
    Hollyn22, urinary control will return. I had radical prostatectomy March 2, 2009. My PSA was 22 presurgery, now 0.008!! I am still wearing diaper and using a pad. So far I have had good days and bad days. The good news is that I am past the flooding accidents for at least four months. I now am able to hold it till I can get to a bathroom ( the first 2 months there were times I had no sensation I had to urinate, would just wet my pad), I am using an average of three pads a day, for some reason I am awakened an average of 2-3 times nightly and I don't even dampen my pad. I was getting up an average 4 or more some nights just a month ago. There is hope and you just have to be patient. I know it is frustrating, but my wife like you, supported me and told me to keep trying...it will get better. Words of advice, do not drink any liquids that have caffeine (believe me, decaf coffee tastes the same to me now), stay away from spicy foods, stay hydrated but do not drink a lot close to bedtime.

    Hang it there, don't give up, better days are coming
    JR1949

    Hang in there additional info
    Sorry, Hollyn, I failed to mention that he needs to do the kegel exercises. They have helped me.
  • JR1949
    JR1949 Member Posts: 230
    JR1949 said:

    Hang in there...urinary control will return
    Hollyn22, urinary control will return. I had radical prostatectomy March 2, 2009. My PSA was 22 presurgery, now 0.008!! I am still wearing diaper and using a pad. So far I have had good days and bad days. The good news is that I am past the flooding accidents for at least four months. I now am able to hold it till I can get to a bathroom ( the first 2 months there were times I had no sensation I had to urinate, would just wet my pad), I am using an average of three pads a day, for some reason I am awakened an average of 2-3 times nightly and I don't even dampen my pad. I was getting up an average 4 or more some nights just a month ago. There is hope and you just have to be patient. I know it is frustrating, but my wife like you, supported me and told me to keep trying...it will get better. Words of advice, do not drink any liquids that have caffeine (believe me, decaf coffee tastes the same to me now), stay away from spicy foods, stay hydrated but do not drink a lot close to bedtime.

    Hang it there, don't give up, better days are coming
    JR1949

    Hang in there additional info
    Sorry, Hollyn, I failed to mention that he needs to do the kegel exercises. They have helped me.
  • JR1949
    JR1949 Member Posts: 230
    JR1949 said:

    Hang in there...urinary control will return
    Hollyn22, urinary control will return. I had radical prostatectomy March 2, 2009. My PSA was 22 presurgery, now 0.008!! I am still wearing diaper and using a pad. So far I have had good days and bad days. The good news is that I am past the flooding accidents for at least four months. I now am able to hold it till I can get to a bathroom ( the first 2 months there were times I had no sensation I had to urinate, would just wet my pad), I am using an average of three pads a day, for some reason I am awakened an average of 2-3 times nightly and I don't even dampen my pad. I was getting up an average 4 or more some nights just a month ago. There is hope and you just have to be patient. I know it is frustrating, but my wife like you, supported me and told me to keep trying...it will get better. Words of advice, do not drink any liquids that have caffeine (believe me, decaf coffee tastes the same to me now), stay away from spicy foods, stay hydrated but do not drink a lot close to bedtime.

    Hang it there, don't give up, better days are coming
    JR1949

    Hang in there additional info
    Sorry, Hollyn, I failed to mention that he needs to do the kegel exercises. They have helped me.
  • Hollynn22
    Hollynn22 Member Posts: 15
    JR1949 said:

    Hang in there...urinary control will return
    Hollyn22, urinary control will return. I had radical prostatectomy March 2, 2009. My PSA was 22 presurgery, now 0.008!! I am still wearing diaper and using a pad. So far I have had good days and bad days. The good news is that I am past the flooding accidents for at least four months. I now am able to hold it till I can get to a bathroom ( the first 2 months there were times I had no sensation I had to urinate, would just wet my pad), I am using an average of three pads a day, for some reason I am awakened an average of 2-3 times nightly and I don't even dampen my pad. I was getting up an average 4 or more some nights just a month ago. There is hope and you just have to be patient. I know it is frustrating, but my wife like you, supported me and told me to keep trying...it will get better. Words of advice, do not drink any liquids that have caffeine (believe me, decaf coffee tastes the same to me now), stay away from spicy foods, stay hydrated but do not drink a lot close to bedtime.

    Hang it there, don't give up, better days are coming
    JR1949

    JR1949: Kegel exercises???
    JR1949,

    Thank you for your advice. I definitely will pass your message to my boyfriend. However, I have question about Kegel exercises, can you explain more about it? What is this exercise and how to do it? I would have my boyfriend to try as soon as I have the instruction.

    God Bless you!
    Thank you:)

    Hollynn22
  • papadon
    papadon Member Posts: 5
    shubbysr said:

    Urinary Control will return!
    Hollynn22,

    Welcome to the club of PC survivors! Of course, your boyfriend. Urinary incontinence is a side effect for all of us post surgery. Remember that we have two valves to hold our urine. One of which is the prostate gland. Well, we removed the prostate gland. This leaves only one valve to hold back the urine. Over time, our bodies adjust and we regain control.
    So, yes it is common to have leakage and yes some of us have to wear "diapers" all day, especially when we return to work.
    It has been three months since my surgery and I see improvement in that I used to saturate 4-5 pads or diapers daily. Today I change 2-3 times every 24 hours!

    Good Luck and thanks for supporting your boyfriend and us!

    shubbysr (jim)

    diaper usage
    Sir, Do you wait until you diaper is saturated before you change? I try to stay dry and clean and use 15 or more diapers per waking day, about 17 - 18 hours. So glad you just use a few. Can you provide me any insight? I'm just over 8 weeks post LRP. Your explainations are excellent.Thanks. Don
  • RRMCJIM
    RRMCJIM Member Posts: 149
    Hollynn22 said:

    Jim, thank you for your clearly explanation
    Today I learn more about my boyfriend leakage and it makes sense to me why he has it. It's good to hear that the unrinary control will return in just a few months. My boyfriend is not alone. There are many nice gentlemen like you out there ready to give us help and advices. We appreciate a lot for your support and wish you best lucks on your recovery road.

    Hollynn22

    leaking
    Welcome, yes it gets better, even if it seems like all is lost... I use only pads at work, I am a tech w/ Harley Davidson, lifting heavy motors and such everyday. I do leak with stressing, but have been off " diapers" after a month. Using only pads forced me to be diligent with my kegels....but improve it will....ED for me was not an issue....woke up with morning "woody" almost from the start....hang in there....
    Jim
    (big ugly biker guy)
  • Olee
    Olee Member Posts: 97
    papadon said:

    diaper usage
    Sir, Do you wait until you diaper is saturated before you change? I try to stay dry and clean and use 15 or more diapers per waking day, about 17 - 18 hours. So glad you just use a few. Can you provide me any insight? I'm just over 8 weeks post LRP. Your explainations are excellent.Thanks. Don

    Leakage
    I can say that for the most part it does get better. The day I had my catheter taken out I was mortified at how bad my leakage was for a few days. My first post op doctors visit was promising and my physician told me that on my next appointment I would be telling him it had improved. He was definitely right on that one. Like I said in the beginning I couldn't stand up,walk or have physical activity without leaking. I used about 4-5 pads a day on average. During my 6 month visit last week I was able to tell my doctor that I use 1 pad during the day and 1 at night. He reminded me of our conversation 6 months ago and I admitted to him that he was right. He still told me that things will continue to improve, so I do have hope. I wish you the best, just hang in there.
  • JR1949
    JR1949 Member Posts: 230
    Hollynn22 said:

    JR1949: Kegel exercises???
    JR1949,

    Thank you for your advice. I definitely will pass your message to my boyfriend. However, I have question about Kegel exercises, can you explain more about it? What is this exercise and how to do it? I would have my boyfriend to try as soon as I have the instruction.

    God Bless you!
    Thank you:)

    Hollynn22

    Kegel exercises?
    Hollyn22,
    Kegel exercises help strenghten your pelvic muscles. You squeeze the muscles you would use to stop the flow of urine. I recommend doing this sitting down. You squeeze the pelvic muscles for three seconds then relax for three seconds. At first it may hurt to do this many times, but work up to three sets of 10 and do this three times a day. You can do this while watching television or reading or whatever works for you.
    I hope this helps
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